We had our last visit with Dr. Convit yesterday, and Robert no longer needs to keep his skin graft covered. There is still a scab over a small portion of the graft, but Dr. Convit said it should fall off naturally. It's OK to wash his head in luke-warm water and to shampoo the entire site (hair or no hair ...). No more bandages. No more Nurse Ratched! Yay for me! Progress for Roberet indeed!
I will miss our periodic visits with the plastic surgeon because he has been the most encouraging and upbeat member of the team we have seen at Washington Hospital Center. But I'm glad we are moving on to what's next ...
As for what that is - Robert is on the list to begin a clinical trial at Johns Hopkins of the GVAX vaccine that is being tested in melanoma. This type of vaccine has been used safetly against other kinds of cancer. There's actually now starting to be some evidence that the GVAX vaccine for pancreatic cancer improves patients' lifespans, but for us the evidence is less important than the possibility that it will do some good.
The study procedure is somewhat tedious in the beginning, and right now we're in the "wait" stage. The folks at Hopkins are working with our insurance company to see how much of the treatment costs will be paid through insurance (thank you, BBNA) and how much Hopkins will pick up. Once that has been settled, we'll go to Baltimore a few times for screening and testing. This will include the three-month full-body scan with a Wood's lamp (for an explanation click here) to make sure no more melanomas have cropped up; PET, MRI, and brain scans to look for other active cancer sites in his body; a full set of blood tests and EKG; and a review of the pathology specimens at Hopkins. We expect all of this to take place in September/October and the series of four monthly vaccinations to begin in October or November.
It's not been determined yet whether Robert will be in the second or third study group. The second group receives only the high dose of the vaccine and the third group also receives injections of cyclophosphamide one day before each vaccination. There is one more slot in the second group before the third group begins to be treated. If someone else moves along more quickly Robert would be in the group that receives the low-dose chemotherapy drug as well. (My July 24 post discussed cyclophosphamide and other factors we needed to consider before deciding whether to enter the trial.) If he ends up in the third group, it will mean two trips to Baltimore for each vaccination rather than one. On the other hand, it appears that the cyclophosphamide would be beneficial.
We might prefer to be in the third group, as long as it doesn't delay starting the vaccines too long. There is a deadline - the vaccinations must begin within 4 months of when he was determined to be free of disease. There's some question about whether that falls in October or November ... we are awaiting word on the actual deadline.
We did take some time to consider a peptide vaccine trial that's starting up at the University of Virginia. This clinical study is just beginning, and the procedures are much more involved - a big factor for us because Charlottesville is so much further away than Baltimore. I think the deciding factor for Robert was that the screening for the peptide vaccine trial includes a sentinel node biopsy of the vaccine site. (Robert explained this procedure in an email I copied here on June 12.) He's not too keen on going through that again ...
September is a busy month. I'll be in Asheville for Gabriel's birthday, and later in the month we take off for the Society of Professional Journalists' annual convention. Mix in there the High Holidays and several work deadlines for Robert - plus whatever we have to do in Baltimore - and we're looking forward to October! But we can always take time to talk with family and friends, so if you have any questions about any of this, just give us a call.